Objective: The objective of this review is to scope the evidence on the wants and needs of families with regards to their level of involvement in treatment for patients with an acquired brain injury or malignant brain tumor.
Introduction: Severe acquired brain injury and malignant brain tumor are diseases occurring unexpectedly and suddenly. Sustaining a severe acquired brain injury or malignant brain tumor has major consequences for patients and their relatives because of its devastating impact on physical, cognitive, social, and psychological well-being. The neurocognitive deficits have been shown to put strain on families in particular.
Inclusion criteria: This scoping review will consider studies involving relatives (≥18 years) of patients (≥18 years) with severe acquired brain injury or malignant brain tumor (WHO grade 3 and 4) from different settings (municipalities, primary care, health care centers, hospital, and long-term care institutions). Studies will be included if they describe any kind of involvement by relatives, and the review will consider all study designs, regardless of their rigor.
Methods: Indexed and gray literature in English, Scandinavian, or German from January 2010 to the present will be considered. The searches will be conducted using bibliographic databases. Studies will be independently screened according to the inclusion criteria by two reviewers based on title, abstract, and full text. In case of disagreement, a third and fourth reviewer will be consulted. A customized data extraction form will be used to extract data from the included studies. The results will be presented in tabular form, accompanied by a narrative summary related to the objective of the present scoping review.
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